how am i? well, i've been better

[rone]

Exactly 6 months ago, I felt a little dizzy, like I was wearing someone else's glasses. It was annoying, but I just got on with my day. That night, however, I started experiencing double vision while watching TV. I decided to sleep on it, hoping that I would be back to normal in the morning. Unfortunately, the next morning I still had the double vision, and in addition to that, my left leg wasn't working quite right. Upon calling the advice nurse at Kaiser, they recommended that we go to the emergency room. After we arrived, I started experiencing a variety of confusing symptoms, and by the end of that day, I was unable to walk or even sit up in bed.

My diagnosis came in around that time: Guillain-Barré syndrome. It's an autoimmune disorder where the immune system, triggered by an infection, attacks the peripheral nervous system's myelin sheath. In addition to the paralysis it caused, it also affected my autonomic systems, which made a mess of my blood pressure, heart rate, and even my insulin levels. My paralysis was particularly severe, rendering me almost unable to move between my ankles and the top of my head. I required a tracheostomy in order to continue breathing, as well as a feeding tube to maintain my nourishment.

After spending five weeks in the hospital, I was moved to a skilled nursing facility and spent 100 days there, near the end of which my breathing and feeding tubes were removed. I was then accepted into Kaiser's acute rehabilitation facility, which we had been told was very highly regarded; after arriving there, it lived up to the hype and I made much more progress in the three weeks I spent there. I've now been home for three weeks and it feels really good, despite the fact that I'm still unable to stand or use my arms and hands (I am using Dragon for Mac to dictate this).

The road ahead still has a lot of physical and occupational therapy. I am in excellent spirits, however, and will keep working hard to return to normal, or at least as close to normal as I can. Through this all, I've had amazing support from family and friends, in particular my friend Morrisa, my stepson David, and most of all my wife Kim, whom I love more with every passing day.

Comments

[ambyr.livejournal.com]

Wow. I'm glad you've resurfaced, and I hope your rehabilitation progresses smoothly.

(If it's not too forward, I'll also mention that I work for the National Library Service for the Blind and Physically Handicapped, and that we provide free audiobooks and playback equipment, including breathswitch and mouth stick adaptors that allow our equipment to be used by people who can't use their hands and mobile audiobook player apps designed with accessibility in mind. If free books would help keep your spirits up, I can point you in the right direction to get enrolled.)

[ronebofh.livejournal.com]

That's a very kind offer. Fortunately, I'm able to read regular books at this time. I actually experienced my first audiobook during my recovery and I'm not sure if they're the sort of thing I enjoy.